Global Lupus awareness still low, new survey reveals

A new global survey from the World Lupus Federation has revealed that public awareness and understanding of lupus remained dangerously low worldwide, in spite of efforts to spotlight the debilitating autoimmune disease.

The findings, released on Tuesday ahead of World Lupus Day on May 10, painted a troubling picture of widespread misinformation, stigma, and poor public understanding surrounding lupus.

According to the survey, 58 per cent of respondents globally admitted they know little or nothing about lupus, underscoring the enormous awareness gap that continues to affect millions of people living with the disease.

Lupus is a chronic autoimmune disease that can damage nearly every organ in the body and, in severe cases, become life-threatening.

It occurs when the immune system mistakenly attacks healthy tissues and organs, affecting the joints, skin, kidneys, brain, heart, lungs, and blood cells.

The disease is notoriously difficult to diagnose because symptoms vary widely from one patient to another and often mimic other illnesses.

Although lupus is not contagious, misconceptions about the disease remain deeply entrenched.

The survey revealed significant regional differences in lupus awareness, as Europe recorded the lowest awareness levels, with 68 per cent of respondents reporting limited or no knowledge of the disease.

Asia followed closely at 64 per cent, while awareness was relatively higher in South America at 55 per cent, Africa at 54 per cent, and the United States at 53 per cent.

The data suggested that even in regions where awareness appeared comparatively better, understanding of the disease remained superficial.

WLF noted that these knowledge gaps contributed directly to delayed diagnosis, inadequate support for patients, and worsening health outcomes.

Beyond low awareness, the survey also highlighted the social stigma faced by people living with lupus due to persistent misinformation.

Regardless of lupus being a noncommunicable disease, 19 per cent of respondents incorrectly believed it could be contagious.

“The misconception appears to influence social behaviour, with 21 per cent saying they would feel uncomfortable sharing food with someone who has lupus, while 18 per cent admitted they would hesitate to hug a person living with the disease.”

The foundation warned that such attitudes deepened the emotional and psychological burden on patients, many of whom already struggled with chronic pain, fatigue, and uncertainty about their condition.

The survey also found widespread confusion around lupus diagnosis, with many respondents unsure of its causes and how it’s identified, leading to delays in recognition and treatment.

Medical experts had long argued that lupus patients frequently endured years of misdiagnosis before receiving proper care because symptoms could resemble conditions such as arthritis, chronic fatigue syndrome, kidney disease, or skin disorders.

Notwithstanding the concerning findings, the survey also revealed encouraging signs that public education campaigns might be assisting in improving recognition of lupus symptoms among the public.

Louise Vetter, President and CEO of the Lupus Foundation of America, described the findings as both encouraging and sobering.

“Our community has made real progress in improving recognition of common lupus symptoms, but misconceptions persist.”

The survey highlights two urgent priorities: accelerate lupus awareness through education that meets people where they are – online, on social media and in traditional media; and provide stronger education for healthcare professionals.

The WLF urged healthcare systems to expand training of medical professionals on lupus symptoms, diagnosis timelines, and treatment pathways to reduce delays in identifying the disease.

The organisation also called on journalists, editors, media organisations, and digital content creators to give lupus sustained and serious attention comparable to other chronic illnesses affecting millions globally.

Vetter added that improving professional medical education was equally vital, stressing that people living with lupus “deserve to feel seen, believed, and supported through better information and care.”

World Lupus Day, observed annually on May 10, seeks to raise awareness about the disease, advocate for improved healthcare services, and mobilise support for research into better treatments and, ultimately, a cure.

The theme for Lupus Awareness Month and World Lupus Day 2026 is “Make Lupus Visible”.